Please let Congress know you support the move by LDA, TFL and CALDA to withdraw from the NIH/IOM State-of-the-Science Lyme Disease and Other Tick Borne Diseases Workshop by reading the statement below and completing the response form. LDA will send your reply directly to Congressman Christopher H. Smith (NJ). It will not be used for any purpose other than this project. Thank you!
Lyme Groups Withdraw from Scientific Meeting
I support the move by the national Lyme Disease Association (LDA), the California Lyme Disease Association (CALDA), and Time For Lyme (TFL) to withdraw from the National Institutes of Health (NIH) sponsored workshop. I agree that the above groups should not participate in nor submit the Institutes of Medicine’s (IOM) commissioned scientific paper to the Panel in protest of the IOM’s workshop about the state of the science regarding Lyme and tick-borne diseases. Despite the 3 groups’ repeated requests for transparency and a balance of scientific viewpoints, as delineated in Congressional Appropriations language, neither the hearing panel nor the speakers selected by the IOM satisfy the Congressional intent or objectives.
The IOM’s mission was to provide an “independent, objective and non-partisan” program and there are no scheduled speakers with opposing viewpoints of similar scientific weight to balance Infectious Diseases Society of America (IDSA) presentations about the research gaps in Lyme disease. Many state-of-the-art scientific researchers, experienced clinicians and patient advocates have been relegated by the IOM and NIH to spectator positions. I believe that this amount of bias undermines the integrity of the scientific workshop and that its final report will reflect this lack of objectivity.
As most who read my blog know, my hubby has been suffering with Lyme Disease for several years now including a paralyzed right side diaphragm. This particular problem (only one of many my hubby experiences), is well known to be a ‘side affect’ of Lyme Disease and documented in various places. Here’s one article about it “Diaphragmatic paralysis due to Lyme disease“.
Just for the record, confirmation articles were discovered AFTER the diagnosis. And although the doctor didn’t confirm the source of the problem (likely afraid to do so), he did confirm the paralysis during one of the two a hospital stays of 8 days on two IV antibiotics for diverticulitis, also from the Lyme Disease. NEITHER OF THESE PROBLEMS, or the high blood pressure and other issues were ever a problem until after the tick bite and the bullseye rash and subsequent ‘typical’ antibiotic treatment (doxycycline) and allergic reaction, or more likely a ‘die off’ reaction, to the massive death of the Lyme bug that nearly killed him with dangerously high blood pressure (which he never suffered with before this incident).
Am I getting through to you Infectious Diseases Society of America (IDSA) and Dr. Gary Wormser of Westchester Medical Center ?! My hubby was a healthy person who was active and vibrant until Lyme Disease struck him down. It was a night and day difference. Now tell me one thing has nothing to do with the other. Anybody?….